Sunday, December 6, 2009

'Tis the Season

Alas, it's that time of year again, when folks of all races, creeds, and colors turn their attentions to friends, family, and the brotherhood of all mankind. A time when all thoughts of the self are shunted aside and give way to the beneficence of faith, hope, and charity. Filled with the spirit of the season, a heartfelt kinship for one and all is celebrated throughout the land...

Okay, let's cut the crap. The holidays are upon us and it's time to party like Tiger Woods, hopefully without getting hit upside the head with a nine iron. In between imbibing too much eggnog (I'm not quite sure what nog is, but it sure helps put the "spirit" in the holidays), giving yourself carpal tunnel from spending countless hours on Amazon.com, and fake smiling your way through holiday office parties, this is a great time of year to give the gift of giving, by donating generously to the charity of your choice. And while I genuinely feel nothing but warm fuzzies for helping the homeless, abused children, or neglected animals, worthy causes all, there is one particular crusade that is near and dear to my heart, and, I suspect, yours, since you are reading this blog.

I speak, of course, about the fight against Multiple Sclerosis. I truly feel that we are on the cusp of some incredible breakthroughs in this battle, from the tremendous promise of stem cell research, to the unraveling of the genetic mysteries presented by the disease, to the recent excitement that has spread like wildfire about the possibility of MS being a vascular disease (the CCSVI theory). On many fronts, the war against MS is finally yielding the kind of results that can be translated from the intellectual exercises of the laboratory into the hard-core realities of patient care. Although the ultimate answers may still lie just beyond our reach, momentum is building, and it's not entirely delusional to have real hope that some momentous breakthroughs may be just over the horizon.

When thinking about making donations to the fight against MS, the one organization that universally comes to mind is the National Multiple Sclerosis Society. To the population at large, the NMSS has become THE face of the struggle against MS . Because of the huge amount of publicity generated by NMSS sponsored events such as MS walks and bike rides, many other worthy organizations fighting the good fight against MS get lost in the Society's shadow.

Please don't get me wrong, the NMSS provides many valuable services and resources to the MS community, but there are smaller organizations slavishly devoted to the complex fight against MS that also deserve attention (and donation dollars). Besides, the Wheelchair Kamikaze has a visceral distaste for conformity, and a natural affinity for the little guy, so why donate your hard-earned cash to the same monolith that everybody else donates their money? It just so happens that I know of a few smaller MS groups devoted exclusively to MS research, whose work I believe to be vital to the fight against Multiple Sclerosis.

Three of my favorite lesser-known MS nonprofit organizations are The Accelerated Cure Project, The Myelin Repair Foundation, and The Multiple Sclerosis Research Center of New York. These terrific, energetic organizations take a very hands-on approach to tackling the the puzzles of Multiple Sclerosis, and work tirelessly on the behalf of those who've heard the dreaded words, "You have Multiple Sclerosis". Here's a little bit about each of them:

The Accelerated Cure Project- Founded by an MS patient, this nonprofit is dedicated to curing MS by determining its causes and mechanisms. They have established an "MS Repository" of blood samples and data that has been made available to all scientists and companies that have promising ideas that might potentially benefit people with MS. Lack of access to high-quality samples and data from MS patients has been a major obstacle that has long plagued MS researchers. For scientists investigating MS, the MS Repository, which so far includes blood samples from over 1000 MS patients, is a gold mine of hard to get materials that can be used for analysis and experimentation. The compiling and organizing of the repository requires a tremendous amount of time and effort, and the funding for the endeavor comes primarily from individuals and families directly affected by MS. MS patients can also choose to participate in the repository itself by donating blood at one of the ACP's participating MS clinics (more information is available on The Accelerated Cure Project website). And, yes, the repository does include samples of the Wheelchair Kamikaze's blood, which for some reason is kept in a lead lined container and is under 24-hour guard by a detachment of specially trained Sasquatches.

The Myelin Repair Foundation-The MRF, also founded by an MS patient, was created to break down the barriers in medical research and commercial drug development that work against the rapid delivery of patient treatments. All too often, researchers work in a kind of vacuum, and often consider each other rivals rather than partners in the battle against MS. The model under which research is currently carried out often presents hurdles to true collaboration among researchers in different laboratories and research groups. The MRF has developed the Accelerated Research Collaboration model, a radical new approach to medical research whose primary goal is the rapid translation of laboratory discoveries into real-world patient treatments. As its name would suggest, The Myelin Repair Foundation has made identifying myelin repair drug targets that will lead to treatments for MS its sole focus. The MRF is heavily involved in investigating the potential of stem cell research, as well as other therapies designed to physically repair the damaged nervous systems of MS patients. The Accelerated Research Collaboration model has proven so revolutionary that many believe it has the potential to change the way of all medical research is conducted. Gifts to the MRF will be matched by a challenge grant from another generous donor, effectively doubling the size of any donation.

The Multiple Sclerosis Research Center of New York-The MSRCNY is an independent research laboratory that is headed by the Wheelchair Kamikaze's own neurologist, Dr. Saud Sadiq. Under Dr. Sadiq's direction, the center conducts groundbreaking research into identifying the cause of MS, understanding the mechanism and progression of the disease, examining new treatment strategies, and studying ways to repair and regenerate nervous system damage. Considered one of the finest independent MS research laboratories in the world, the MSRCNY is staffed by world-class researchers and doctors whose sole focus is defeating Multiple Sclerosis and increasing the effectiveness of MS patient care. Dr. Sadiq and his staff also deserve enormous admiration for putting up with the constant pestering of some wise ass crackpot who likes to drive his wheelchair much too fast. Thanks to the generosity of an anonymous donor, tax deductible contributions to MSRCNY will be matched dollar for dollar, doubling the value of any donation.

All of these organizations do incredibly valuable work, and are truly worthy of any donations that you, your family, or your friends would be kind enough to make. If you have MS, donating to The Accelerated Cure Project, The Myelin Repair Foundation, or the Multiple Sclerosis Research Center of New York is truly a case of helping yourself by helping others. If you love someone with MS, there could be no finer expression of your affection than a donation made on their behalf to any or all of these groups.

Of course, there are other extremely worthy organizations doing terrific things to help combat MS, and I don't mean to slight any of them by exclusion. The Accelerated Cure Project, The Myelin Repair Foundation, and the Multiple Sclerosis Research Center of New York, though, get the exclusive and much sought after Wheelchair Kamikaze stamp of approval...

Having done tutoring of homeless children and gone into soup kitchen next to it, having had students of great need and emotional problems, sometimes stemming from their economic lives and parents, well makes me look lucky in my circumstances with "just" MS.

Sometimes they have similar or worse stuff in their lives along with everything else. Whether kids really like it or not (and really they're ok) part of available holiday money goes towards the hungry and sick. There is really terrible stuff out there. OK, I'll get off my soapbox now.

There are many truly important causes out there to which we can donate our time and money. But unless you are like Bill Gates with a foundation that can help many charitable organizations, a person has to prioritize where they choose to give. Everyone has to listen to their own heart and conscience.

MS research has become a personal cause for me. My goal is not only to donate, but to raise funds towards research and to help the ms community here in Norway. This is perhaps my way to bring some positive meaning out having to live with an ms diagnosis.

But here in Norway, with perhaps one of the highest ms rates in the world, there is almost no awareness of the disease. This year I nominated the MS Association as a possible recipient of my company’s annual Christmas gift to charity. But I got a flat refusal from management even to include the association in the list of 8 charitable organizations that the employees would vote on. For them, ms had no “PR value”. So I guess I have my work cut out for me….

That is sad about Norway. MS awareness is so lousy everywhere. We all just do what we can. I love the MRF, selfishly because as a SPMS I now need repair. PLUS I believe in their way of organizing. I am no fan of the NMSS. Great post.

I am holding a fundraiser, "Zumba party - MOVE! for MS (Multiple Sclerosis)" from noon - 5pm in York, Maine* on March 13th, 2010 to raise awareness and funds for MS.

My personal goal was to raise enough money so that we could get an "over-the-street" banner to go over the main street of our small town to announce MS Awareness Week every year. I started this whole thing two months ago and as I had raised enough in silent auction and raffle prizes for the event for March, I went ahead and ordered the banner. It is awesome, I am thrilled to bits! If everything stopped today and no more money was raised, I have accomplished my goal - every year, for two weeks, a bright orange banner will hang over the main street in town making people AWARE of MS. Many people who have MS don't know that ORANGE is the colour for MS!

The proceeds after costs for this fundraiser are going to the NMSS, but I agree with all of you, there are other organizations that well deserve the money. I had to go with the NMSS on this as I needed the name recognition and logo behind me as this is a first fundraiser for me.

Perhaps another year, with the help of the banner to remind people that it is Awareness Week, it will make it easier for others to do fundraisers and hopefully other MS research organizations will benefit.

Hey, Anon - I'm doing it because I CAN for EVERYONE. "ONLY" writing checks is doing SOMETHING good, every bit helps. And if we all do what we are ABLE to do, that's what counts. And even if we're not able to write checks, we can promote awareness by wearing orange during MS Awareness Week (March 8-14, 2010), we can let people know that ORANGE is the colour that represents MS. We can remember the second WORLD MS Day on May 26, 2010, and know that we are part of a WORLD with thousands more people with MS. We just need to make people AWARE!! Thanks for your support ANON!! Every boost along the way is a great help to me!!! :-)

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...